Struggling with severely underweight child, no urgency from medics

[DinosaurJuiceForEveryone]

11yo DS is autistic and has an eating disorder called ARFID. Im begging for help but no-one seems concerned.

When diagnosed 4 years ago he was between 25th - 50th centile for weight. Since then he has gradually slipped down the char until now hes off the bottom (below 0.4 centile).

Hes so weak and tired that 5 minutes at a park completely wipes him out. Hes breathless walking up the stairs. Because of the autism he struggles hugely with demands so I cant just tell him to eat/drink.

Though he does eat its very restrictive and every day there's a calorie deficit of 800-900 calories. He has several vitamin deficiencies but cant tolerate the oral supplements. We've attempted what feels like all supplement drink/shake options and he just gags and refuses them. Fljid kntake is a huge concern also - drinking around 500ml a day (can be less) is normal for him.

Dietitian said a few months ago that if things didn't improve he would need a feeding tube as the next step. DS wants this. He is excited to have pressure to eat and drink removed and wants to be healthier. It would mean medicines and supplements can be given through the tube also.

Hes been referred for a PEG but the waiting list is a minimum of 12 months.

Monitoring his intake, noticing cold extremities and mottled skin and trying to encourage without demanding are taking a huge toll on me. He is literally wasting away in front of my eyes. But because he is 'stable' (ha!) at home and not actively in organ failure it's apparently fine to just keep going.

Im so desperately worried for him but no-one seems to be taking it seriously 😭

Your MP has no power to 'get involved' in the medical decisions, but he or she may be able to advocate for you. It is probably better to ring up your MP's office and ask than to assume that they can do nothing.

Could you add another MCDs run later in the evening under the guise that you want something. So he’s sitting in the car at drive thru, you turn and ask him if he wants anything? Will probably say no but you go ahead and get a cold drink or something.

If you make it another routine, could he be tempted one time to go for another round of nuggets occasionally.

I knew a family that visited MCDS twice a day because the fries had to fresh for their DD to be able to eat them. Couldn’t stand anything reheated.

Has your GP/specialist recommended an appetite stimulant at all? or a course of steroids if they're able to take them?

My youngest was 9 when she developed an ED. I will never forget those first months of hell, ever. She's still very slender, and eats like a bird but she's so much healthier thank god.

Hi OP,
I'm so sorry that you and your child are going through such a dreadful time.

I would ask you that if you are concerned about any changes- lethargy, no energy for even ordinary movement at home, dehydration beyond what you are used to please take him to A&E and keep taking him whenever you are in fear for him/feel his presentation is worse.

For different reasons my son had become frail, first or second percentile for his weight while 70-80 percentile for his height. The paediatrician had told us he couldn't refer him for tests as he "cant just go referring everybody" (yep still angry) so when my frail/ill son was sick after dinner and when he was in pain I took him to A&E. Second visit to A&E and he was put on a ward, referred for tests and those resulted in his Croh's diagnosis.

Yes A&E told me that it is "not really what they are here for" and I told them if my frail, underweight son can't keep his dinner down then it won't be long until he is coming in in an ambulance. Not sorry one bit.

If nothing else your son might be able to be hydrated with a drip and even receive calories through a drip assuming he accepts the procedures. If he is having health emergencies they might be able to expedite his procedure.

I want people to understand that I am not wanting you to exploit the NHS or jump the queue but when your child is at the bottom of the percentiles and their weight is falling you are desperate. A waiting list of a year suggests there is not much triageing going on. Some people on that list will not be first percentile with a falling weight.

No we haven't done this as 1) buying mcdonalds even once a day is expensive, and 2)he has had safe foods in the past that he's dropped. As McDonalds is the most calorific thing he eats I dont want to run the risk of him dropping it if he gets sick of eating it twice a day

Please look at page 31 of this
it says when emergency admission is required, if he meets any of the thresholds show it to his GP

https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr233-medical-emergencies-in-eating-disorders-(meed)-guidance.pdf?sfvrsn=2d327483_63

My DS3 is now 24, ASD and has had a severely restricted diet since he was 2. He was regularly seen by a dietician from when he was diagnosed, basically to make sure he didn’t slip under the 25th centile for weight. He was also seen by CAMHS, who after six weeks of therapy, declared they couldn’t do anything as his food phobia was related to his autism.

Your DS does eat a slightly more varied cider than my DS who is restricted to Asda margarita pizza, Weetoes, Rocky bars and toast. He will drink a milk shake so we do get some protein in him and orange juice so gets vit C. I think this is as good as it will get for him. He is highly intelligent (a 1st in his degree) so understands he has to take multivitamins to avoid deficiencies. It has only been the last 6/7 years that he will swallow pills before that I put vitamin drops in his drinks. Iron was the biggest problem as he was anaemic, he always looked washed out and run down. They stopped doing children’s supplements with iron.

My DS was/is actually fearful of food and food situations and will avoid being with people who are eating - family life was very restricted when the DCs were younger because of this (would have meltdowns when younger).

I haven’t got any real advice, only I have been where you have been. I had to step back as it was stressing me out so much. I got very inventive trying to get him to eat but not much worked. Have you tried getting him to chose fancy straws, cups, beakers to get more fluid in him? Juice lollies etc.

If he is intelligent enough to understand that he will become very ill if he doesn’t drink enough. My DS refused drink when he was ill - one time he was very poorly, the gp actually phoned me the day after she saw as she was so concerned about his fluid intake with hospitalisation a possibility.

There is a book called Can’t Eat Won’t Eat which maybe useful, if only to make you feel not so alone. There is a SN school mentioned in the book that is no longer around that my eldest DS1 went to (he also restricted his food). The school insisted that every child had school lunches (no pack lunches) and assured us he would be eating everything by the end of the year and he was! But as they say in the book, the parents would not be able to achieve this as we are too close to the situation. I just wish the school was around to have helped me with DS3…

Good luck OP

@DinosaurJuiceForEveryone I’m so sorry for what you’re going through. A lot of people unfortunately just don’t get what it’s like to have a child with severe sensory issues. My son has ASD, he is now in his early 20s. He still has an incredibly restrictive diet, only certain foods, certain brands he will eat, a handful ,then if it isn’t cooked in exactly the same way he can’t eat it. Only certain drinks. I would say over the years it has improved a very small amount. But still incredibly restricted. He has many sensory problems & food is just one of them. He does drink water, only one brand, & it has to be icy cold for him to drink, so we have to keep the fridge stocked up with it. But as he’s got older he understands that drinking is very important so he’ll drink.
I understand- he wants to stick with his safe food, it’s very very hard adding new foods. I’m lucky that my son will eat a chewable vitamin-only one brand though!
Can you see a doctor privately? Google specialists in PEG feeding in children & see what comes up in your area. Many, actually most, private doctors also work for the NHS, so once you’ve had the initial consultation they might be able to fast track you back within the NHS. It’s worth a go anyway. Also with a PEG in you can still encourage your son to try new foods & drinks, it also doesn’t have to be permanent, in the future if he’s doing better he could have it removed.

Have you had genetic testing done? It sounds like your DS has mitochondrial disease of some sort. umdf.org or mitoaction.org are good sites to start reading about it and getting support (and hopefully a referral to the correct type of doctor).

Well done you for getting the help your son needed. Its weird how people underplay underweight, frail children isnt it? If your child was a healthy weight of course you wouldn't run to A&E for vomiting after a meal, but when they're very underweight and arent able to keep down a meal it's a different thing altogether. I hope hes doing well now.

If you haven’t -contact PALS with copies of these emails.

it can often spark some action.

My son has undiagnosed arfid. I will tell you what works for my son. It might not work for yours.... Honestly just put out a range of different things and don't comment on them. If he eats something don't acknowledge it. If he doesn't, don't acknowledge it. I had to get the school on board and eventually they realised and accepted that if all he ate was a biscuit then that was better than nothing. I lived on tomato soup for about 5 years as a young child.

Can they advocate too for him in terms of stressing urgency

Perhaps not every evening, but if budget allows, once or twice a week, as I say, under the guise that you feel like something, ask him while you are getting yours, he might show absolutely zero interest but may one time be happy to have more?

McDs is such a lifeline for so many families, it’s something that you should really get help to pay for.

Yes he's had regular treatment since his diagnosis and he is doing well thank you.

Have you tried a vitamin patch for deficiencies OP? I used this one while water fasting. It stayed on excellently and I forgot it was there. Not sure what good it did but other reviewers with kids with ARFID said it did make a difference to vit levels. You could put it on the back of his shoulder so he forgets it.

Patch MD

Could you go private for a PEG tube? I try and crowdfund if you can't afford it. This situation is serious enough to warrant it from your OP. I'd donate to something like this. It's a terrible endictment on the NHS.

Private Percutaneous Endoscopic Gastrostomy (PEG Tube)

I'm on page 3 and I feel like this thread is more @Aboutlola wanting to question everything as if you're talking rubbish, than it is about your child @DinosaurJuiceForEveryone.

I really feel for you having to watch him struggle so much before your eyes. As a mum to SID/ ASD / non verbal child with a restrictive diet, I fully get your frustration 😔

So, given I've not been able to get past page 3, all I have to add is that I concur with a PP - Definitely go to PALS, they have been brilliant for me in the past. Their real job is to make sure there's as few actual complaints as possible so when they start getting involved, departments will react in a way that gets you answers.

Best of luck to you both x

Also talk to your local McDs about your son and the cost. You’d be surprised at how helpful they can be. They might be able to get a discount for you.

I knew one year a McDs staff member traveled to work on Xmas day (restaurant is closed) to stand at the drive thru booth to hand over fries to a child whom that’s all they could eat. If they don’t travel to the McDs, she wouldn’t eat the fries. The kitchen was closed but the staff member was allowed to have the keys to be able to hand over the fries (which the parents had taken from home and discreetly handed over to the staff member beforehand )

so Sorry you are going through this, it must be absolutely heartbreaking to watch your lovely little boy struggling so much. My child stopped eating when he was 6 years old but only for 3 months it was awful so i have some understanding of how you are feeling. I guess you have tried everything but a nurse told me to try him with custard as it was full of calories and more like a drink. Also soup/yoghurt but I’m certain you will have tried these.
i hope he gets sorted Asap, its way too long for him to be waiting when his case sounds so severe.

Oh how lovely of that worker 🩷

Christ sake, your posting style is so so familiar. You've been hounding people all day and now at it again with a different username.

@DinosaurJuiceForEveryoneso sorry you’re having these issues and care is not good enough.

im in 40’s and have had ARFID all my life though of course it wasn’t recognised until recently so I was just labelled a fussy kid.

i struggle and have these shakes which are not powdery at all and put in blender with ice cube makes the texture really well. Have you tried that rather than just pre mixed ones which are rank!!! Good luck to you both

Having disabled DC is extremely expensive, isn’t it?

If DS is entitled to FSM, are you receiving money or supermarket vouchers since DS can’t go to school and eat there?

Does DS receive a social care package including an activities budget? You could look to get agreement for at least one McDs a week funded via this. Depending on how good your social worker is, they may say this isn’t possible, but it can be under accessing the community, community interaction and life skills.

Hopefully they will see how your son is losing weight and prioritize

The waiting list makes me sad - that your son is not the only one. Eating disorders are so traumatic for the whole family.

The issue is most PEGs are done for kids who aspirate when eating/drinking so eating disorders go to the back of the queue. Im not saying this is wrong btw, at the end of the day if your child needs a PEG anyone would want them at the top of the list wouldnt they.